ASD Assessment

[suze79]

Hi

 

I have just recevied a report from the CAHMS team regarding J's assessment and I am devastated. They are telling me that although J displays difficulties in social interaction, difficulties with anxieties and dyspraxic type difficulties they feel it would "not be useful at this time, to explain J's difficulties with a diagnosis of Aspergers" and "we will review in a year".

 

The report details the assessment but it does not seem to me that they are describing J's behaviour. The took a very detailed history from me which in part they got wrong and i had to ring them to make sure parts of it were corrected, they didnt seemed to pleased with this i have to admit. The assessment was carried out in March and we are only now receiving the final report!

 

I had a meeting with the team who carried out the assessment and I fell to pieces. I dont know if anyone can relate to this but it is absoultely terrifying waiting to hear if your child has a disabiltiy that will affect the rest of his life but when you are told "mmmmm maybe, we'll look at him again in a year" was absoultely shattering. I know my son has this. He will not go outside because he has a fear of flying things. He opened the car door whilst we were travelling down the motorway because he thought he saw a fly. He has had to be taken out of school because he couldnt cope. He was wetting the bed and eating his clothes! He thinks he is going to travel back in time and that he sold his soul to the devil. He does not understand facial expressions (even though during the assessment they said he could) he constantly asks me, his dad and all the family is everything all right and stares at ou faces for ages to try and guage our reactions to things. The list is endless. I really thought if we had a diagnosis we would be able to get some help. But now it feels like they dont believe us because theyre one hour assessment said "mmmmmm maybe".

 

We feel like we are going mad! I really dont want my son to have this but i know in my heart he does. Has anyone had a similar experience? Would it be useful to pursue a private diagnosis?

[justine1]

Hi

 

I have just recevied a report from the CAHMS team regarding J's assessment and I am devastated. They are telling me that although J displays difficulties in social interaction, difficulties with anxieties and dyspraxic type difficulties they feel it would "not be useful at this time, to explain J's difficulties with a diagnosis of Aspergers" and "we will review in a year".

 

The report details the assessment but it does not seem to me that they are describing J's behaviour. The took a very detailed history from me which in part they got wrong and i had to ring them to make sure parts of it were corrected, they didnt seemed to pleased with this i have to admit. The assessment was carried out in March and we are only now receiving the final report!

 

I had a meeting with the team who carried out the assessment and I fell to pieces. I dont know if anyone can relate to this but it is absoultely terrifying waiting to hear if your child has a disabiltiy that will affect the rest of his life but when you are told "mmmmm maybe, we'll look at him again in a year" was absoultely shattering. I know my son has this. He will not go outside because he has a fear of flying things. He opened the car door whilst we were travelling down the motorway because he thought he saw a fly. He has had to be taken out of school because he couldnt cope. He was wetting the bed and eating his clothes! He thinks he is going to travel back in time and that he sold his soul to the devil. He does not understand facial expressions (even though during the assessment they said he could) he constantly asks me, his dad and all the family is everything all right and stares at ou faces for ages to try and guage our reactions to things. The list is endless. I really thought if we had a diagnosis we would be able to get some help. But now it feels like they dont believe us because theyre one hour assessment said "mmmmmm maybe".

 

We feel like we are going mad! I really dont want my son to have this but i know in my heart he does. Has anyone had a similar experience? Would it be useful to pursue a private diagnosis?

Hi I dont really think I can give you much advice other than to hang in there and keep insisting on furthur assesment.My SON IS SIX AND WENT FOR AN ASSEsment similar to yours where basically I was asked loads of questions about him they also sent a report back to me,it was also an hour,the Paed said no way can she diagnosis without talking to him and interacting with him for a furthur hour so we will go back after Christmas,she has said she is convinced it is Aspergers and she has said he has serious social and behavioural and speech problems(although his vocab is good he cannot express himself properly) My point is I have heard so many stories of children been misdiagnosed or undiagnosed and it seems most have only been to one appt. I dont think the Paeds can see exactly what the child is like after just an hour esp. if their focus is on writing down what the parents are saying.I was fortunate in that I had my youngest with me when I went so she noticed how Sam did not interact with his his brother and she noticed other behaviour while we talked.I just think if you feel there is something you should persevere,I have to say I dont know about the things he says like "he sold his soul to the devil" my son doesnt do this but other AS kids may do so.But maybe in the meantime you couls get some help with councelling or something?You should talk to a GP about your concerns.I know it is frustrating but just carry on.Is he at school?Surely they would be giving reports to the paeds about your son?

[suze79]

Thanks for the reply,

 

J is 10 and was first identified at school and assessed for dyspraxia when he was 6. He got diagnosed with dyspraxia and recieved a course of OT and we have been told he will get more at some point. We thought his behavioural and emotional issues were all done to low self esteem due to his dyspraxia but a lot of ocd behaviours just doesnt fit. It wasnt till he was admitted to hospital last year for appendicitis that the doctors there thought he should be assessed for AS. He did not appear to be in pain nor did he complain of feeling sore he was just really agitated and kept saying he was bored. His appendix burst and it was very touch and go because he developed peritonitis. Anyway when I mentioned to the doctors at the hospital that he was dyspraxic the said there was a possibilty he was misdiagnosed because of the behaviour they witnessed in the 4 weeks he was in hospital.

 

I eventually took J out of school in June and am now homeschooling. I was sick of fighting with the school (4 years fighting) to get J extra help and support that I decided to home educate. The school failed to notice that J's clothes were constantly soaking around the neck line because he would chew his clothes in class. He would wet him self and not tell anyone because he was too scared to ask to go the toilet or say he had not noticed what he had done. The clock stopped working in the class which caused him great distress. The teachers just said "oh J has a remarkable imagination and he is quite eccentric", J thought time had stopped. I volunteered as a classroom assistant and was horrified to see the shell of my son in his class. It was like invasion of the body snatchers, he was totally vacant. I could go on about various instances with school including when J said a teacher hit him (she never she gently tapped him on the shoulder) but there are too many. Needless to say a lost complete faith in the system. J seemed to use all his energy to try to be normal at school that he seemed to turn into a robot when he was there and then gone into meltdown when he came home.

 

I cant help feeling that the school and the health try to get away with doing the bare minimum of support they can get away with.

[JsMum]

 

 

 

The National Autistic Society have further information on requesting a second opionion, as you are entitled to a second opinion, the NAS have further information on where you can go for a second opinion.

 

So I would discuss this with them, we went down the private route but he has now been dx anyway but private route could be another avenue though expensive.

 

I do know the feeling of been told your son does not have ASD when its obvous they do.

 

I would still get it all in writing as it is still evidence that your son has difficulties and will need support in school and eventually it can be used when your son has further assessments.

 

There is still a lot of options.

 

Contact a family have a great helpline too and can direct you in the right direction for further assessments too.

 

In a small way they have admitted your son has social difficulties, co ordination difficultes and a real Anxiety issue, they still need to address these needs.

 

So keep going.

 

JsMumxxxx

 

[suze79]

I think we would all be happier if we could actually call whatever it is by a name. It so hard to explain to some people why we cant do certain things or why we have to be careful of what J eats (i did a lot research into additives, sugars etc). I just feel like we are constantly having to fight for everything and it shouldnt ne this way.

 

I read a lot of the threads on here and can relate so much to a lot of the stories. A lot of them are word for word our own lives. I just feel so frustrated. I just want my son to feel happy and do things that other children can like playing outside, riding a bike and swim. I know he may never be able to ride a bike or swim but i just want to be happy for who he is.

 

Thanks for the reply.

[Kathryn]

This is a sad story, Suze, and very frustrating for you.

 

You could pursue a private diagnosis - although it costs. We didn't go down the normal route for my daughter. We had a private EP assessment and then asked for a referral to a psychiatrist in another health authority, so we got there in the end. Both professionals were very highly qualified and experienced in ASD so nobody questioned their reports.I'm glad we did that because our Camhs hadn't a clue. (I'm not denigrating your Camhs but expertise varies).

 

Good luck, keep persisting. I hope your son is happier now he's at home

 

K x

[bippybop]

suze79, I had a private dx. His first (NHS) psychiatrist said that he didn't have autism and dxd him with Post-Traumatic Stress Disorder. I eventually got a second opinion from another NHS psych as well which confirmed ASD. It was expensive, but when I think about how long I could have been waiting for an NHS dx and the stress of not knowing, I think it was worth it. DS is also 10 and is due to transfer to secondary and it's played a crucial role in the whole statementing process. If you're home-eding that might not be such an issue for you, but it was also important in order to know what kind of provision would be suitable for DS.

 

One interesting thing that I realised was that for a lot of sources of support, I didn't actually have to produce a dx report! For things like the NAS help programmes, things allowing self-referral like NAS services and some outreach/carer services, they didn't ask for more information. And I read more about strategies and techniques to use before his dx and found they were useful - you don't need a piece of paper telling you that he has ASD for you to start teaching him as an ASD child. That might well be another way of showing that ASD would be an appropriate dx - that your child responds to strategies that have proven successful with ASD children, like social stories etc.

 

Two organisations that I found useful were BIBIC and I CAN. They both carry out assessments and there are funds to help for low-income families.

Edited November 16, 2009 by bippybop